The previous article about Autism in my family’s life was from my point of view and how I navigate my personal and private life while addressing my daughter Na’Via’s needs; she was also able to tell her story. It was quite emotional for me, because Na’Via said some things I never realized and it broke my heart. I wasn’t protecting her from difficult situations. Simultaneously, I was extremely proud to hear her say all people should be treated with respect, no matter what diagnosis they may or may not have.
I remember the days as a newly single mom trying to navigate the world with my two girls. We would go to the circus but have to leave as soon as the motorcycles came out. Movies and shows at a performance center were rare because I had no one to sit with Victoria while I walked Na’Via around as she went straight into a meltdown. I also remember when they’d transition to their father’s house and Na’Via didn’t like the change. I realized one day, yes, she has Victoria to go with her but how is Victoria handling this? That is the hardest part some days of raising a child living with Autism. I have to make sure her sister has her space and I am there for her as well. Honestly, I have been downright horrible at it. I asked for her forgiveness and she always said, “It’s okay. I understand.” But did she really?
This final piece of our story are the words of my oldest daughter, Victoria. She is a teenager navigating the world and handling life as it comes. I remember some significant moments in her life that I also tried to soften the blow or protect her from, and I screwed it all up. One of those moments was the day I told her I was leaving the house in which her dad and I raised her. Her eyes got so big and I saw her heart break. The divorce was hard on her. But having a sister with Autism has prepared her for any unexpected event in ways I could never even come close to.
Here are her words:
Me: Victoria, there are no right or wrong answers to the questions I want to ask you. Do not even consider if you are hurting my feelings or if it’s what you should say. Just speak your truth.
Victoria: Yes, ma’am. Okay.
Me: Explain Autism in your own words.
Victoria: It’s just another way of saying you’re different and you act or think differently, which makes you unique.
Me: When did you realize your sister was not typical?
Victoria: I don’t really remember when I first realized it. Na’Via was always normal to me and I mean she still is. I think I’m so used to her symptoms that I don’t see any differences in her. But as far as I remember, I probably realized she was different some time before sixth grade because after that is when she started having meltdowns I would witness.
Me: Is she different at home than in public?
Victoria: I mean, it really depends on the situation. If she’s with her friends or family and I’m there, she will act bold and almost like she has more power over me. At home, she’s quieter and a little less rude but it’s still there.
Me: Do you wish you could change her living with Autism?
Victoria: No, not really because the bad parts I go through with her I don’t think are because of her having Autism. Sometimes I just see it as that’s just how she is and how she acts.
Me: Describe a good experience with her and how Autism played a role, maybe a time she made you proud.
Victoria: Whenever she would play softball, I felt proud because it’s a big deal for her to get out and be around other people and be around noise. She would have so much fun and she was really happy and it made me happy to see her smile.
Me: Describe a difficult situation when Autism played a part that upset you.
Victoria: There isn’t any specific time where it has made me really, really mad. Most of the time it’s when we are in loud places or places with a lot of people where she will have to leave the room or area. A moment that upset me once was when I was at a huge volleyball tournament and I was so excited for you to watch me play but due to her sensory issues you’d have to leave or take her into a quiet area. I’m used to it now so when you leave, I am not that hurt but it still sucks sometimes.
Me: What’s the best part about having a sister with Autism?
Victoria: Having someone as brave, crazy, funny, and outspoken as her is always a great thing to have. I also love her for being her.
Me: What’s the worst part?
Victoria: The worst part about her having Autism is the constant anxiety I feel whenever we go out and we are around others. Whether it’s wondering when her next breakdown will be, if people are being mean to her for having Autism when she’s at school, or if people are staring and judging her. All I want to do is protect her from the world for as long as I can because she might not see it but I see the bad in the world and people out there. But I’m glad we mainly focus on the good things.
Me: How do you cope with the disappointments and times you are upset?
Victoria: In all honesty, I don’t think I cope with the disappointments. It always sticks with me because it’s hard to get through. I can try and shake it off but some things you can’t do that with. Isolating yourself and sleeping sometimes works, too (she starts to laugh).
Me: What do you think her future will be like?
Victoria: I think she’ll be very successful in the future. I’m just worried about her being in the world alone because people are not very accepting. I just want to make sure she’ll be okay, but I think she will be. Also, I see her as being a boss of some type of business in the future.
Me: What advice would you give to other teens with special needs siblings?
Victoria: It requires a lot of patience when dealing with someone who has Autism or anything else that makes them different. There will be a lot of good times and a lot of bad but it’s worth going through those times for the person you love and seeing the beauty in them and their lives and their future.
Me: What do parents of children in your position need to remember?
Victoria: You only get to have that child once so it’s best to enjoy your life with them and see how awesome they are throughout the hardships of having them.
Me: What do parents of children in your position need to remember about what kids like you need (not the child with Autism)?
Victoria: A lot! A lot of love, patience, attention … and Starbucks is all we need. Just make sure your child knows how awesome they are and how strong they are.
Victoria has been her sister’s top advocate from day one. Even against me, she has her back. I’m so proud of her own individual accomplishments, academically and personally. But nothing makes me prouder when I see her guiding her sister and making sure she feels safe and secure. Even her friends genuinely include her little sister. Na’Via has participated in activities such as her sister’s team manager, part of the group going to the movies, etc. I even hear them have talks about growing up and boys. NOOOOOOOOOO! She was the ball girl at an NC State volleyball game while Victoria was able to focus on the sport she loves. In the past we have had to leave such events because of the noise level and number of people in the gym. Oh, how I remember Victoria’s tears.
But with time, understanding, and support, Victoria has come to realize she can include Na’Via in her life and support her at the same time. It’s important to remember a child caring in any way or form for a sibling with a disability needs their own time and space as well. I had to remember Victoria needed me to be there for her just as much as her sister Na’Via does. Sometimes it’s a tough decision when I have to pick one of them, but that’s real life. I won’t always be there for Na’Via. It’s unfair and unrealistic to make that a goal anyway. All three of us are continuing to live with doing what’s best for each other.
NaShonda just recently finished her 20th year teaching in North Carolina Public Schools. Arriving by way of Pennsylvania, she enjoys working with students of all ages and abilities. She’s been featured in TIME magazine for her continued advocacy to improve public education. She lives in Wake County.